Politics of the personal
An MP with an autistic son takes a surprising stand on the issue
John Ivison
National Post Source
Saturday, May 13, 2006
OTTAWA - Mike Lake, a rookie Conservative MP from Edmonton, didn't run for
office to be an advocate for autism but as the father of an autistic son, he
quickly found himself singled out as a potential ally by supporters of
increased government funding.
"When people started calling, how could you possibly reject the opportunity
to do something for parents going through the same thing we went through --
all the same fears and concerns? You can't reject that."
Yet, despite his sympathy for parents, he has refused to back a private
member's bill by NDP MP Peter Stoffer, which proposes that the Canada Health
Act be amended to include autism funding under medicare.
"I'm thankful he's brought it up. But I think it would be hypocritical of me
to say the country needs a more well thought out plan and then support a
bill that would, ad hoc, name autism as the only thing named in the Canada
Health Act. I'm not sure that's the way to go."
Mr. Stoffer's bill is unlikely to reach a vote soon, but he has met with
Health Minister Tony Clement and urged him to sit down with the provinces to
hammer out a financial deal under which Ottawa would pick up the tab for the
intensive therapy funding, which Mr. Stoffer estimates is around
$300-500-million a year. At the moment, the Alberta government pays for all
autism treatment but most other provinces have only patchwork funding.
A spokesman for Mr. Clement said the Health Minister is prepared to sit down
with the provinces.
In his maiden speech in the House, Mr. Lake said responsibility for
providing treatment programs lies with the provinces and territories. But he
added that he would do everything he could to promote action by the federal
government in its areas of authority.
"Had I come in here as an autism advocate and been elected saying I was
going to change the laws on autism, I'd probably have better answers. I
don't have all the answers right now. But I will tell you that there is a
lot of recognition from my Conservative caucus colleagues who recognize the
needs of these families and who have a lot of desire to learn from me," he
said in an interview.
Autism funding has become a hot issue on Parliament Hill since the Supreme
Court ruled in late 2004 that provinces were not infringing the Charter
rights of autistic children by denying them funding for applied behavioural
analysis therapy. The court referred the issue back to Parliament, which it
said should resolve the question of what the public health system should
provide.
Since the provinces have resisted paying for autism therapy, and the courts
have now passed on taking action, there is a growing feeling among some
federal politicians that it is up to them to push for a solution,
particularly as the incidence of autism appears to be on the rise (a recent
U.S. estimate claimed that one in 175 children is now affected).
Politicians of all stripes have supported the idea that funding for
intensive therapy is a sensible investment, without which many autistic
children are institutionalized at public expense.
The Liberal government insisted funding was a provincial issue and refused
to amend the Canada Health Act. But pressure is building on the Conservative
government, even from within its own caucus, to be more responsive. Besides
Mr. Lake, Saskatchewan MP Maurice Vellacott has a 12-year-old son who was
diagnosed last fall with asperger's syndrome, a high-functioning form of
autism.
Mr. Lake has relayed to his colleagues the anxiety parents go through when
their child is diagnosed. He was told his son, Jaden, had the disorder,
which causes verbal, social and emotional problems, eight years ago when the
boy was just two.
"We could tell he was a smart kid, in terms of numbers and the way he played
with letter toys. But he would sit in a corner and play and you could not
get his attention at all. We wondered if he was deaf, but if you went into a
different room and put Winnie the Pooh on television, he'd hear it. Then we
read a book about autism ... and as we were reading this book, we knew. It
was Jaden."
The book talked about the importance of getting children into costly
intensive therapy to help with social interaction.
Mr. Lake was earning a good living as director of ticket sales for the
Edmonton Oilers but was faced with a $40-50,000 annual bill for the
intensive one-on-one treatment. He took out a line of credit but one of the
Oiler players -- he prefers not to say which one -- heard of the situation
and wrote a cheque to cover the treatment. Fortunately for Mr. Lake and his,
wife Debi, the province of Alberta decided to fully fund autism therapy
through to age 18 in 1998, and he never did cash the player's cheque.
Jaden still doesn't talk but Mr. Lake said the intensive therapy -- known as
ABA -- has changed his son's life. "The program works. ABA works," he said.
"Jaden is now in a regular Grade 4 classroom and he might have wound up
being institutionalized in the past."
The treatment is taught through repetition. "The first thing they did was
sit Jaden at a table and put a spoon in front of him and ask him to hand
them the spoon. They would do that six hours a day, for days and weeks. The
next stage, they would put a spoon and a fork down and go through the whole
process again. It is very tedious and intensive. But his pediatrician said
that he is entirely different due to ABA. He's now one of the most amazing
kids -- he will look you in the eye and he will understand you when you ask
him to do something."
Unfortunately, Alberta's generous funding is the exception. Ontario and
British Columbia both fund treatment until age six -- if parents can access
the limited number of spaces. "I know of several families who are moving to
Alberta to get the funding," Mr. Lake said. "That's not the way the system
is supposed to work."
jivison@nationalpost.com
© National Post 2006
Sunday, May 14, 2006
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